Saturday, February 17, 2018

Childhood Apraxia of Speech: What the hell is that?

About three and half years ago, my son was diagnosed with "verbal dyspraxia." The speech therapist we were seeing at the time was lackluster, to say the least. She drilled with my then 4-year-old over and over again. She had no personality, she didn't even try to engage with him, and she never even considered adapting her methods to fit his needs.

I used to have to drag him--literally--to those appointments. After six months of that, I got fed up, to say the least. So I fired her. To find a new speech therapist, I turned to the place we all turn these days, the Internet, for guidance. I was (and still am) part of some awesome mom-to-mom groups, both local and national, that address kids with severe speech delays, specifically verbal dyspraxia, or as it's more commonly known, Childhood Apraxia of Speech (typically shortened to either CAS or just apraxia).

When Jack was first diagnosed, I went into denial mode first. "Oh, it's not really that; his scores were borderline. He just needs a diagnosis so insurance will cover."

But denial or not, he needed speech therapy, so I got a recommendation from one of those local mom-to-mom groups and found the best SLP we've ever worked with (and there have been several).

She confirmed the diagnosis of apraxia, and I think that was when I started to actually believe it.

So the question is what is apraxia?

Apraxia is a neurological disorder that effects the complex motor planning that produces speech. Let's break that down, shall we? Neurological refers to the way the brain functions. Motor planning is the response of the muscles to the brain (so the brain says, "Hey, arm, lift up and wave around," and your muscles are all, "Yeah, okay, we can do that." And, bam, your arm is in the air.) And speech is spoken communication (note: speech is separate from language).

So put that all together and what do you get? Apraxia is a disorder in which the brain is unable to properly control and direct the muscles of the tongue, jaw and mouth; the result is a reduced ability to communicate verbally.

Apraxia is one of those odd disorders that is marked by inconsistency. One of the things I remember hearing early is that the speech pattern errors Jack was making were "consistently inconsistent." So he'd always make errors in a sound he was trying to produce, but they weren't always the same errors. They also sometimes gain words and then lose them again. For example, once when he was about 2, he said the word "apple" perfectly and in context (my husband was eating an apple). He never said it again until after age 4 when we started with our current SLP.

Defining CAS can be difficult. Our first SLP (who was also pretty awesome) suspected it after she started working with Jack, but he was too young to make a diagnosis at that point. Why does age matter? Because some of the speech pattern errors that mark apraxia are also age appropriate in a very young child. If a child ages, but his or her speech does not advance, then it might be a marker of CAS. But there are other, more complex, speech errors that mark the disorder as well. For example, sequencing is really hard for CAS kids. Sequencing is exactly what it sounds like...the order of sounds. Think about a word many kids mispronounce when they are little...'spaghetti' comes to mind. Many kids will say something like 'pasghetti' because the sounds are hard for their little brains to sequence, to put in the right order. But they grow out of it. CAS kids don't grow out of it without specific, targeted speech therapy. (Side note: It's highly unlikely that a CAS kid would have all the sounds required to say "spaghetti" at a young age anyway. [Side side note: As a test, I just asked Jack to say "spaghetti," he dropped the /p/. It took him three times to get it close enough to right.])

These are just a few examples of why CAS is difficult to diagnose. One, the errors are inconsistent; two, at young ages, they can mimic typical speech development. Not to mention, not all SLPs are created equal (a theme this post keeps coming back to). Many of them don't have the necessary training to properly diagnose, let alone treat, CAS.

As in my previous posts, I feel the need to include a disclaimer: I am NOT an SLP. If you think your child may have a speech delay or disorder that requires therapy to overcome, find yourself an SLP. If your kiddo is under 3, start with Birth to Three; sometimes also called Early Intervention. You do not need a doctor's recommendation to call. Parental concern is all you need. If your child is in a school system, you can get speech services through the school. You'll need an IEP and you'll need to be a strong, forceful advocate for your kid. Apraxia needs a very specific type of therapy and it needs to adapt. It's not one size fits all. In addition, if you suspect CAS, click on over to CASANA to get some basic starting information.

It's been a long hard road to get Jack's speech to where it is now. Now he's understandable almost all of the time, but it's clear pretty quickly to anyone who listens to him that he has a speech disorder. So even though it's greatly improved and he's intelligible, there's still no hiding his apraxia. And we still see that same fantastic speech therapist three times a week.

As I said above, not all speech therapists are created equally. Ours is well-versed in apraxia. She keeps herself up to date with webinars, conferences and the latest research. Whenever she finds something that she thinks will help my son, she implements it immediately. If it doesn't work, she ditches the approach. She uses evidence-based approaches, but also recognizes that Jack is a unique individual and what works with one apraxic kid won't necessarily work with another.

(As a side note, here's something funny. He's turning into a little speech therapist on his own. I just heard him correct his brother's pronunciation of the word "them." He said, "It's them, with a /th/ not dem.")

From our very first visit, Jack's speech therapist met him where he was instead of demanding he met her expectations. So when he was shy and wanted to get down on the floor to play, she got down on the floor with him. When she sees that he's a little extra sensory seeking, she provides games that include movement or other sensory input. She has constantly adapted her approach to keep up with his changing needs. In other words, she takes a child-centered approach that ultimately leads to him having fun while doing work. And it is work.

Imagine the thing that's hardest in the world for you. Now imagine you have a one-on-one class three times a week to help you improve that hardest thing. It's a pretty demanding thing to ask of a 7-year-old. But time and again, they come out of the session and the SLP tells me, "He did great!" And he does great because she helps him do great.

There is a chance that his apraxia will never fully resolve. He may always speak with an impairment. But that doesn't mean that it will hold him back. He's smart, funny, kind and so full of life and energy. He's an amazing kid, and I'm so lucky to be on his team.

Monday, February 12, 2018

Sensory Diet: Feeding the Vestibular System

So last post, I talked about the importance of proprioceptive input for sensory seeking kiddos. Proprioceptive input feeds your kiddo's need for body awareness. So everything from lifting a heavy book, box or even weight to jumping up and down will help kids feed this particular sense.




One other type of feedback I try to make sure my son gets on a daily basis is vestibular input. Now this time of year (February in Connecticut), it can be a little challenging to get him this type of input. That's because this sense is fed through big movements like swinging, spinning, hanging upside on monkey bars...you know, the kind of stuff I can totally set up in my tiny cramped, I mean, cozy house.

So just as a disclaimer to this post and the previous one--I am no OT. I get my information from the OT my son sees, plus books I read about sensory seeking/defensive kids and of course, Google searches. If you think your child struggles with any of these types of sensory issues, I highly recommend finding an OT and getting an evaluation done.

That bit of official business aside, let's answer the question, what is the vestibular system?
Sensory information about motion, equilibrium and spatial orientation is provided by the vestibular apparatus (VEDA--Life Rebalanced)
Super helpful, right?

Basically, when you turn your head, the fluid in your middle and inner ear sloshes around. Through the intricate and beautiful system that is the human body, the movement is detected, and the body reacts (hopefully) appropriately, allowing you to maintain balance, equilibrium and spatial orientation, as stated above. This happens with almost any movement. So in kids who crave that extra sensory input, movements that really activate that fluid are helpful.

Movements that can help feed the vestibular system:

  • Swinging
  • Spinning (on a swing or office chair)
  • Biking
  • Rolling (like on a therapy ball)
  • Sledding
  • Turning cartwheels or somersaults
  • Hanging upside down

What's really great for kids is to do one of these types of movements and then stop and be still. This helps the vestibular system to integrate all the input it just received. Think about how that final pose in yoga (savasana aka corpse pose) helps your body integrate all that great stretching and work your body just did. Movement followed by stillness helps bring it all together. 

So how do you know if your child has trouble with his or her vestibular system? Does your child...
  • Have a constant need for movement?
  • Seem impulsive, maybe even aggressive?
  • Like to be upside down while doing sitting still activities (reading, watching TV, etc)?
  • Prefer running to walking?
  • Not get as dizzy as you would expect after spinning?

A lot of these signs are the same as a child seeking proprioceptive input. Some kids are sensory seeking (like mine--which is why I focus on this type of behavior), but some are sensory avoiding. If your child is the complete opposite of the above list, then he or she might be sensory avoiding.

There are a few things to remember when putting your child on a sensory diet. First, remember to follow his or her lead. Encourage your child to engage in these activities so that his senses are fed, but don't push them. Second, a child who is sensory seeking one day might be sensory defensive the next. Kids fluctuate with their needs. Adults tend to want kids to be stable, but they just aren't, and it's our job to help them navigate what feels like an ever-changing landscape, not to try to stuff them into the mold we want or need from them. Finally, remember to have fun. These are activities that most kids enjoy and that we all probably enjoyed when we were kids. So swing with your kid, take a bike ride together, race them down a hill--in a sled, or just rolling. Don't worry about the grass stains, and don't worry about the judgement of others. 

Again, I am not an OT. I'm just a mom with a sensory seeking kiddo, so I try my hardest to understand what he needs. It's been a long drawn out battle for me to understand his needs and work harder to anticipate them before they manifest as disruptive behavior. Seek out an OT or trained professional if you think your kiddo's "bad" behavior might be tied to some bigger issue.

Thursday, February 8, 2018

Sensory Diet: Proprioceptive Input

One of the things I try to work on with my son is feeding his senses. He is a sensory seeker. What does that mean?

Hiking is another great way to feed a lot of senses: the cool winter air, the sound of the leaves rustling, the sight of the branches blowing in the breeze...plus the proprioceptive input of constant movement. 

It means:

  • he has a high need to touch and be touched
  • he needs to move...a lot
  • he likes to feel stuff against his body
We all know about our five senses: hearing, touch, taste, smell and sight, but did you know there are actually other senses as well?

Specifically, there are the senses that take in proprioceptive and vestibular input. Those are some big, fancy words, and I didn't come across them all on my own. My son sees a wonderful occupational therapist (OT) who helps him and teaches me how to help him. So what do those big words mean?

Proprioception refers to how we feel our bodies in relation to the space around us. It's why you can close your eyes and touch your finger to your nose (usually...put the wine down!). You can think of proprioception as body awareness, a sense of yourself in relation to the people around you and the objects in the room. It's why we don't walk into walls or bump into furniture.

My son has a high need to feed this sense. It's the reason that when I sit on the couch next to him, he immediately zips himself to my side like we are made of Velcro. It's the reason he loves to snuggle with his grandmother, and it's the reason he doesn't just walk over and sit on the couch, he runs to it and throws himself against it. 

Now that I recognize his need for this type of input, I try to feed it when I see him seeking out his own proprioceptive input. So when he starts throwing himself against the couch, I'll say, 

"Hey, Jack...let's:
  • do some frog hops
  • walk like a crab
  • jump off the couch
  • do a wheelbarrow walk

These are just some examples of how to feed that sense of proprioception. I also take him to bounce houses places or trampoline parks. These places are great for winter time proprioceptive input. In the summer, all we need is a park. Running, jumping, hanging from monkey bars, playing tag with friends. All of those feed that same sense.

In addition, Jack likes to touch things. So a soft blanket gets rubbed against cheek, he held a quartz crystal during his last chiropractic appointment and he really liked touching its cool, smooth surface. He uses a weighted blanket at night made of soft fleece with a silky edge. He pets my hair.

He also constantly chews things, and while I admonish him over and over again to stop chewing on his clothes and offer the silicone chewy bead necklaces he has, I haven't had luck discouraging that particular habit. We are both works in progress.  

Obviously, all kids have a need for these activities and I've never met a mom who didn't have a better day after her kids were able to release energy in these ways. Plus these are all forms of basic exercise, so they are super important for any kid to learn how to be healthy and fit. We should all encourage our kids to run around in the sunshine and fresh air or jump at the trampoline part. But when you have a sensory seeker, you know the difference between a regular kid who needs to run around and play and your kid who needs just that extra bit of everything.

This post ended up being longer than I anticipated...so check back in a day or two for a follow-up on what vestibular input is all about. 

One of the best things about a sensory diet is that it feeds your little seekers senses before they have that strong need...the need that might manifest in rambunctious, disruptive behavior. Basically it amounts to the old adage...an ounce of prevention is worth a pound of cure.